New Member - What can I expect?

[MaryEBS]

Hello everyone, My name is Mary and I am 58 years old.  I was diagnosed with AN in April and I just finished 3 cyberknife treatments on Wednesday.  Before treatment I had a hearing loss, but not total loss in my right ear and the hearing I do have is somewhat distorted.  I also have tinnitus but not constantly.  I don't believe I have balance issues (hard to say sometimes since I have arthritis in both feet).  I don't know the size of the tumor other than my doctor categorized it as small.  I was fully advised of the possibility of facial nerve damage as a result of treatment...the doctor stated that it effects less than 3%.But after reading this forum it seems as this may happen much more often than I was led to believe.   I was also advised I may have further hearing loss.  After the first treatment I had room spinning dizziness and vomiting... second and third treatments resulted in only mild nausea.  I am obsessed now waiting and wondering what is going to happen.  I am going back to work on Monday and I am concerned that I am not going to be able to concentrate. I am interested in hearing anything about what or when I will know more.  I see the doctor in one month.

[CHD63]

Hi Mary and welcome to this forum of caring, supportive friends .....

I did not have radiation treatment for my AN so I cannot relate any personal experiences that might be helpful.  However, many other active forum posters are post-CK patients and will chime in here soon.

Many thoughts and prayers.

Clarice

[MaryEBS]

Thank you for your response Clarice.  I am having a hard time focusing on moving forward and fearing the unknown.  I appreciate you taking the time to answer.

[TJ]

Mary

First let me say that since your AN was small, that is good news to have it treated.  I had CK almost two years ago.  Each person has different reactions to the radiation.  At first you may feel very tired, that is very common for either CK or GK.  You may experience balance issues, but not all have them.  Your tinnitus may or may not improve. Your doctor was correct in saying you may have some hearing loss from the CK.  We have to remember the tumor is still there and it is compressing the nerve.  CK just hopefully will stop the growth.  I am not sure of any facial issues from CK, but I know if you have surgery there is a chance then.

One of the main issues is that you may feel many different side effects at different times of the recovery.  The doctor told me that side effects can pop up as long as two years after radiation.

I am hoping that you have a smooth recovery, and this will be in your past.

TJ

[MaryEBS]

Hello TJ,

Thank you so much for your kind response.  The wait after treatment is proving to be more stressful for me than the anticipation of the treatment.  I started back to work today and think I answered everyone's questions so the curiosity factor has been dealt with ... I am hoping I will now get back into the work groove and stop looking for side effects.  Wishing you all the best for continued recovery.

Mary

[jaylogs]

Hey Mary, how are you doing? I hope this finds you doing well!  I am glad your first day of work went well!! That's probably the best way to do things, is just not fixtating on when that next shoe will drop.  For myself, I wanted to get back to as close as a normal life as I could and yes, it will take some time, but amazingly, before you realize it, you'll find that all those symptoms and bumps and scars fade and you don't even remember at what point they went away.  Take each day step by step, and you'll do just fine! Take care and keep us updated!
Jay

[MaryEBS]

Hello Jay,

Nice to meet you!  Day 2 was a better day at the office .  Not too many curious questions today...and it does seem to help to be thinking about normal things and not stressing on what if.  Funny... sitting at my computer now I am very mindful of a throbbing on the side of my ear, but I can't say I even noticed it all day .   I am going to push forward and focus on what I can control and trust that in the end I will be fine.  Thank you so much for the words of encouragement, I would say you don't know how much that they mean... but then again you probably do.  I will definitely stay close to the boards with my progress... it is so great to be able to reach out to others who know exactly what this feels like. 

Many Thanks,

Mary

[It is what it is]

I haven't been treated yet but I am adding my good wishes for your continued recovery.  It seems amazing to me that you are already back at work!  Take good care of you. 

Karen

[millie]

Hi-I was diagnosed in Feb and have another MRI tomorrow.  I  am a newbie in the watch and wait category.  Just wanted to share with you that I very much identify with your feeling of "with these symptoms, how am I ever going to get anything done."  Then something wonderful happens-I have the four  grandkids for an overnighter, or I go to a bridal shower, or we have a great surprise visit with an old friend, and I FORGET the symtoms and really have a quality of life day!  I think the trick is to stop agonizing and try to remember each day is a blessing.  (Often easier said than done.)

Another of the situations  that  I can id with is how you feel  when people ask questions.  I think  most people  know very little about head tumors. I only share with people thatreally seem to care, and that depends also on my physical and mental disposition, and the time and place.


Take time to heal.    Take time for yourself.



Hang in there!  Millie

[MaryEBS]

Hello Karen,

Thanks so much for your wishes.  I'm back to work for 2 weeks now... okay so I missed a day and a half but all in all it is going pretty well. 

I appreciate your encouragement,

[MaryEBS]

Hello Millie -

Thanks for your response.  I was diagnosed in April and I knew I would never be able to just watch and wait even though I was assured it was small enough to do so.  I have been obsessed with it since diagosis which is why I went ahead with the CK right away. 

You are so right when you say 'then something happens...'  I was feeling particularly sorry for myself one day last week when my niece called to tell me she just came back from having a sonogram of the baby girl she is carrying.  Her first girl after three boys...  I became instantly joyous and thought of nothing but life. I guess the trick is to be so involved in living that there is no time to obsess about what ifs.  I am continuing to work as much as possible even when I am admitting to being happy about the holiday in the middle of the work week .  I see my doctor for my one month check up next week and then will try to focus on moving forward with life.

I am sending you good wishes for your watch and wait... and all the happiness you can expect.

Thanks for your response and take care of you too!

Mary

[chloes mema]

Mary

I finished my three CK treatments on May 12 so I'm a little ahead of you.  For me my pre-CK symptoms are still with me, I don't think better or worse but I do seem to pay more attention to them than before CK.  The only two things I've noticed is my taste buds are shot (hasn't stopped me from eating however  ) and if I do a lot in one day I'm worthless for the next day or two.  So I'm trying to "even" out my activities. 

The one thing I'm experiencing this week is I'm having trouble with my sinus which is making my balance and dizziness problems way worse.

Neither of my doctors mentioned anything about side effects; why I don't know.  If I did not belong to the forum I would have no idea what may be coming.  I'm hoping that they haven't mentioned anything because they don't want me to "imagine" side effects and it's not that they don't know they exist.

On a humorous note; my neurootologist said I already had some facial paralysis because I don't have wrinkles.  I replied, that's from years of using thousands of dollars of expensive face cream.  Really!  Give me a break.    

Remember we all respond differently to our AN and our procedure.

Take care, pay attention to your body, and heal well.

Karen

[sarahinPA]

MARY, I HAD GAMMA KNIFE IN 2009, AND BECAME ONE OF THE UNLUCKY 2% WHO HAD REGROWTH. I HAD SURGERY TO REMOVE MY AN IN JULY 2011.

YOUR SYMPTOMS APPEAR TO BE NORMAL, ALTHOUGH IF YOUR HAVING CONCERNS CONTACT YOUR DOCTOR. MY DOCTOR AND NURSES WERE ALWAYS WILLING TO ANSWER MY QUESTIONS AND WERE A BIG HELP FOR ME. I HAVE ONLY RECENTLY COME BACK TO THE FORUM TO HELP SUPPORT THOSE WHO NEED SUPPORT URING THIS TIME. I WILL BE THINKING ABOUT YOU, AND HOPE THAT YOU ARE FEELING MORE LIKE YOURSELF IN A FEW DAYS!

[MaryEBS]

Hi Karen -

Thanks so much for your response.  I'm glad to hear your symptoms are pretty much the same as before your treatment.  Mine have definitely changed and you are right I am much more tuned into them than I was before.  Funny you mention your sinus problems.  I have always had allergies and sinus problems but I have been having more of them lately... I never even considered that they may be contributing to the exacerbated balance issues.  Again, I had some of this before but usually put it down to the arthritis in my feet...now I seem to notice more. 

My doctors briefly mentioned some side effects but both down played them when speaking as if they are very rare.  My radiation oncologist did say after I was done that he knew I 'was going to be trouble' when I told him about the spinning dizziness after treatment 1... he has been very good and reassuring to me explaining that I may just be particularly sensitive to the radiation... now I find out!!

I am back to work for 3 weeks now and doing okay... I am not at 100% yet but I have an amazing group of peers who are very supportive and It is good to be busy so I don't dwell on my symptoms.

Hope you are taking good care as well!

Mary

[MaryEBS]

Hello SaraHinPa -

I am so sorry to hear that you had to have surgery as a result of regrowth.  Hope you are doing okay Post Op?

This forum is so great I am lucky to have found it.  It really was very disconcerting for me in the beginning to experience new symptoms so quickly... the doctors really had me thinking that nothing would change for quite a while.  Getting back to as normal as possible has seemed to help.

My doctor has been very good to me answering questions... reassuring me etc.  I see him next Friday for my one month follow up.

Sending you good wishes for your speedy recovery from your recent surgery.  Please stay on the boards and post your progress.

Thanks again,

Mary